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How to Approach Sensitive
Topics with Pediatric Oncology
Patients and Families
NCCS Teleconference
Janet Duncan, MSN, CPNP, CPON
Pediatric Advanced Care Team
Dana-Farber Cancer Institute and Children’s Hospital, Boston
February 22, 2012
Palliative Care: What is it?
 Care for those with serious conditions or
advanced illnesses that are life-threatening
 Comprehensive management of physical,
psychosocial, and spiritual needs of the child
and family
 Often includes disease-directed care
 Helping children to live as well as possible with
optimal quality of life
53,287 children ages 0 to 19 died in 2007
15-19 yrs 25%
10-14 yrs 6%
0-1 - 55%
5-9 yrs - 5%
1-4 yrs - 9%
Pediatrics, Annual Summary of Vital
Statistics: 2008
Percentage of total childhood deaths (1-19 yrs)
by major causes (2007) n = 24,149
Heart Disease 4%
Chromosomal/
Congenital
Abnom. 6%
Resp Distress 3%
Other 2%
Cancer 10%
Homicide &
Suicide 23%
Unint. Injuries
51%
Pediatrics, Annual Summary of Vital Statistics: 2008
Percentage of total Infant deaths by major
causes (2007)
n = 29,138
Newborn
Complications 14%
Accidents 6%
Chromosomal/
Congenital
Abnom. 30%
SIDS 12%
Pregnancy
Complications 14%
Short Gestation
24%
Pediatrics 2011, Annual Summary of
Vital Statistics: 2008
PACT model of care
Hope for cure, life extension, a miracle…
Individualized blending of care directed
at underlying illness
and
physical, emotional, social, and spiritual
End-oflife care
needs of child and family
with continuous reevaluation and adjustment
Hope for comfort, meaning…
Bereavement
care
Optimal time for referral
 At diagnosis of life-threatening or serious
illness
 “Anticipating the possibility of dying, in
children with life-threatening illness, remains
a challenge.”
 In reality



Certain brain tumors, i.e. ATRT
Stage IV Neuroblastoma
Second stem cell transplant, high risk
transplant
Mack & Wolfe, 2006, Curr Opin Pediatr, Early integration of pediatric
palliative care: for some children palliative care starts at diagnosis
The Role of Palliative Care
 Optimize pain and symptom management
 Facilitate communication between family and
the primary care team
 Enhance quality of life with emphasis on
meaningfulness
 Improve coordination of care across settings
Barriers to Optimal Care
Rarity of childhood death
Diversity of childhood illness
Lack of developmentally appropriate
assessment tools
Geographic diversity
Limited formal education
Reimbursement issues
Disenfranchised primary caregivers
The emotional aspect
Liben, Papadatou, Wolfe. 2007. The Lancet. Pediatric
palliative care: challenges and emerging ideas
Challenges
 Child dying is out of natural
order
 We want to “do everything”
to preserve life
 Is a “need” to protect
 Developmental stages of
childhood
Challenges Continued…..
 Child may move in and out of school, home,
hospital, creating complex and ever changing
needs
 Child is not legally competent, parents are
surrogate decision makers
 Significant stressors on family



Financial… loss of income
Emotional….guilt
Physical ….caring for other children, home, lack of
sleep, lack of self care
Core Ideals
Open communication
Intensive symptom management
Timely access to care
Flexibility
Psychosocial and spiritual support
Child oriented, family oriented
Any place, any time
Meaningful experiences
Strategies
 Interdisciplinary team meets with family
and allow the story to enfold
 Listen without prejudice and with empathy
 Team meeting, consult note, phone call
communication with primary providers
 Build a trusting relationship and
~Maintain hope always~
5 Questions
 Would you tell me about your child?
 What is your understanding of your child's
illness?
 When thinking and making decisions about
your child, what is most important to you?
 What are your hopes?
 What are your worries?
Communication
 Honor family communication style

Inherent desire to protect may result in constricted
communication
 Children often know intuitively

Encourage parents to prepare child and sibs
 Maintain trust through honest communication

Lack of information may lead to anxiety and/or fear
Communication to elicit spiritual &
cultural context
 How do you understand your child’s illness?
 What is the meaning of pain and/or suffering
for your family?
 Do you have any previous experiences with
death in your family?
 What is your child’s understanding of his/her
illness?
 What have you told your other children about
the illness?
Words to Avoid
Forbidden Words/Concepts:
What would you like us to do?
Alternatives:
Based on our understanding of your
goals, we would recommend…
The parents signed a DNR
The patient is DNR
A resuscitation status order
was placed in the chart
Withdraw support
Focus on treating symptoms and
comfort not using artificial
ventilation, nutrition/hydration
Narcotics
Pain medications such as morphine,
opioids
Communicating With Patient/Family
 “There is nothing more we can do.”
“We have come to that point where there are no medicines
that we know of that can help stop the disease.”
“We are hoping for the best but need to prepare in case
things don’t go the way we want them to. We want to think
together about what kind of interventions we all think make
sense if your child becomes sicker.”
“DNR Talks” vs. Goals of Care
“We need to know what do you want us to do if….?”
OR
“What is most important to you for your child?”
“Our recommendation as a team is….”
“We will do everything possible to keep
your child comfortable, minimize
suffering, and allow for meaningful experiences
for your child and your family.”
HOPE
 Parents can and do hold dual hopes
 Hope for life extension, cure, miracle
 Hope for comfort, meaning
 “Although physicians sometimes limit prognostic
information to preserve hope, we found no evidence
that prognostic disclosure makes parents less
hopeful. Instead, disclosure of prognosis by the
physician can support hope, even when the
prognosis is poor.”
MackJ et al, J Clin Oncol, 2007.
Understanding of Prognosis Among Parents of Children With
Cancer: Parental Optimism and the Parent-Physician Interaction
In Summary
 Anticipate needs of child and family, both
physical and psychological
 Facilitate communication between child and
family
 Facilitate communication between family and
medical system and community
 Access resources in the community
 Help children live as well as possible for as
long as possible